Luck of the Irish

“Misti, I received the results of your MRI and we discovered something. I have some answers for your symptoms…” those words spewing from my voicemail felt surprisingly harsh to me on my favorite day of the year, St. Patrick’s Day. I expected the doctor find a slipped disc or a small curvature in my spine but I heard the strangest sounding word I’d ever heard, syringomyelia. I remember asking the nurse to spell it because I was flabbergasted at the sound of the disorder in which I was apparently suffering. She said, “Misti, you have a cyst…INSIDE your spinal cord and it’s quite large. We are referring you to a neurologist.” The first thought in my head was, “great, the luck of the Irish…”

I found out that day that Syringomyelia is a cyst within the spinal cord consisting of cerebral spinal fluid (CSF) and that my cyst, often called a syrinx, stretches from my cervical spine (C5) to my thoracic spine (T5). I began frantically searching for answers regarding the disorder and found many heart breaking stories. They were of the trials and tribulations surrounding this evidently lifelong and agonizing disorder. I also found out that I had every symptom and that when symptoms arise, it’s generally not a good thing. I was terrified!

 After visiting with my neurologist I discovered that my syrinx is in a very inopportune location. Surgery is a very common treatment for this disorder; however, because the majority of my syrinx is in my thoracic spine, cutting into the spinal cord in that location would cause irreparable damage. I would lose my proprioception (ability to determine the location of my limbs). With the support of my family and neurologist, I have opted not to have surgery on my syrinx.

This blog is going to be dedicated to my journey living with this disorder and my trials, tribulations and triumphs. I hope that my journey from diagnosis through my treatment will be an inspirational story that will help people who have spinal cord injuries or disorders to realize that although there are many days the pain is insufferable, we can be normal people and live a full and active life. This disorder is definitely interrupting my life, but I will certainly fight back!

For more information regarding Syringomyelia please visit the Chiari and Syringomyelia Foundation and American Syringomyelia & Chiari Alliance Project.

Misti